Tuesday, July 29, 2008

Even More Bad News

Thomas was diagnosed yesterday with Juvenile Myoclonic Epilepsy.

I have not blogged about this--the events leading up to this, because I assumed Thomas would feel it too personal. I was wrong.

Sometime around March, after my dad had his heart attack, Thomas asked me if my body ever jerked. I told him sure, as I'm falling asleep. He asked if it ever jerked or jolted any other time. No. He expressed to me that sometimes his body did that.

I took it as a red flag, but we did not have time to do anything about it.

Fast forward to the beginning of June, when I happened to be in conversation with a neurologist. The doctor was describing the onset of Juvenile Myoclonic Epilepsy. He said it starts out with "jerks" of the body at puberty. They typically happen in the morning, and it is typically the upper body, specifically the arms and head. The minute the doctor said this, the tears poured down my face. I knew. I told him that my 12-year-old had been complaining of the jolts or jerks. He said get him in for an EEG.

I scheduled and EEG immediately, but we were unable to get in until yesterday.

So all this while, during the sadness of dad's death, our own medical emergencies, in the back of my head I was worried sick that my baby had epilepsy. I did not struggle with this alone, I shared it with my best friend, but it has been very difficult.

Yesterday was the big day. Bob, Thomas and I were all three very cranky. We drove to a town an hour away (because we don't live in civilization, and there is no neurologist here) for his EEG. The process took about an hour and a half. The tech took a red grease pencil and tape measure and measured Thomas' head, placing red marks. She then attached the electrodes, 23 of them, to his head. That took awhile. Then the test started.

She said it would be a good thing for Thomas to go to sleep. He did. We sat and watched, and could see the EEG on the computer screen. I had no idea what I was looking at, but I did realize there was an awful lot of activity for a child who was asleep.

At one point in the test, I felt a coughing spree coming on. We were not supposed to talk, and I because I also was having difficulty breathing and I felt like the walls were closing in, I stepped out. Thomas was in safe hands, with his dad and the tech. I went outside for some fresh air, got myself a bottle of water, shed a few tears, composed myself and went back in. Oh yeah, I took a Xanax, too.

When I got back in, Thomas was awake and the tech started the strobe light portion of the test. Apparently, some people with epilepsy are photo-sensitive. Pretty soon the test was over and we escaped for lunch.

While at lunch, I broke my tooth. The top third of the back half of one of my bottom teeth just crumbled. Never a dull moment. Will see my dentist today. That was my root canal tooth -- so it was dead anyway.

We drove back to the clinic for the appointment with the doctor. All three of us were scrunched on a bench waiting for the doctor. I personally had a difficult time breathing due to stress. Thomas was tense and tight as a board. Finally the doctor came in.

My heart sunk when he started talking. He was asking all kinds of questions and not getting to the point. I knew it would be a diagnosis we did not want. Bob and I exchanged a look, because he knew, too.

He asked about learning disabilities and ADD. I don't know about ADD, we've never felt the need to get a diagnosis. I do know Thomas has issues with focus. As for learning disabilities, he was diagnosed as twice exceptional: gifted with learning disabilities. I have never shared that diagnosis with Thomas because I knew the learning disability part would crush him. His disability is processing speed. He does have central auditory processing disorder, which he knows about. So I um'ed, er'ed my way through that conversation, because I wasn't going to blurt out LDs right then. It didn't really matter anyway.

The doctor then said that Thomas had a very small airway. He asked us if Thomas snores, which we said yes. He was going to make a referral to the ENT doctor. He explained he wasn't an ENT, but that he would probably have to have his tonsils out to open up his airway. He suspects sleep apnea with Thomas. He thinks the ENT will want a sleep study.

So then he got to the heart of the matter. In a round about way, he gave us the diagnosis of Juvenile Myoclonic Epilepsy, JME. He started rattling on about medications when Thomas interrupted him. Thomas innocently asked him, "So are you saying I have epilepsy?" The doctor said yes. Thomas's body just went limp. I don't think he heard a lot after that.

At this point it seemed the whole conversation was rushed. I was feeling confused and also I was not thinking clearly enough to ask questions. Bob took over, thankfully, because my brain was shut down. The doctor prescribed a medication.

I was able to get in that Thomas goes to summer camp on Sunday, and should he start the med now or wait. Now. And there are no restrictions on what Thomas can do at camp either, as long as there are lifeguards during swimming and safety equipment on the rock climbing walls and high stuff. There is.

The doctor dropped the ball on explaining epilepsy and what exactly this diagnosis means to Thomas. The only thing he really said to him was that there are far worse things he could have. And there are. But to a 12-year-old, and his parents, this isn't so great. This has life-long consequences. What has started out as jerks has an 80-percent chance of developing into grand mal seizures. However, this is the most controllable form of epilepsy. The chances of a normal life are great.

Normal--define normal. Thomas will not be able to fly an airplane. Thomas will not be able to join the military. The chances are good that his college education will be paid for due to his disability. Many family members have received that benefit. And yes, he is officially disabled.

Epilepsy is no stranger to us. It runs in Bob's family. It's nothing to be ashamed of. Society has long put attached a stigma to it. "Have a fit" is a common expression that stems from epileptic seizures. I thought Thomas would want this kept private. He doesn't, because he wants the world to know that it's just misfiring of the electricity in a brain. That's all. It's a short circuit, if you will.

When we got home yesterday, we talked about what would be likely: the development of grand mal seizures. We talked about the few limitations he would have in life. We talked about the need for quality sleep on a nightly basis--no more staying up late. It was all very overwhelming to Thomas, and he ended up crying--a lot. We all three snuggled in mom and dad's bed, and our puppies joined us. In between tears, we had comic relief from our puppies.

We are on our way to finding our new normal.

This year has just sucked. I don't know how scared I should be with that ENT referral. Thomas isn't looking forward to a possible surgery. Neither am I. We're still mourning the loss of my dad, Thomas's Grandpa Charlie. We still miss our Jerry Lee. We still seem to have this black cloud hanging over our heads.

But we are all thankful that we have good health care, that time will heal all wounds, and life will go on. I worry about Thomas, my 12-year-old boy, and the amount of trauma he has been through this year. It's so much. I'm learning, though, that the has good character, he's remaining positive and accepting things. He's stronger than I could have imagined. He cries when he needs to. He lives in the moment, enjoying time with his friends. He's typical 12, moody and establishing his independence. I am very proud of him.

As he told me last night: I have epilepsy, mom, but it doesn't have to have me.

I think we'll survive.


Gottfredsen said...

wow what a rough year you guys have been having. My heart goes out to you. My family is sending you positive thoughts and hopes for good things to happen this year. What an amazing son you have that at 12 he is determined to not let this get him. That is a true sign of maturity. As for the tonsils it is not such a big deal surgery. Gabe had his out for the same reason (sleep apnea). He healed really quick. Just have lots of his favorite ice cream and popsicles on hand. Oh yeah and of course you get to spoil him rotten until he feels better. It's the mom's job after all right.

mull-berry said...

Thomas is lucky to have such caring parents as you.

Bonni said...

Good thoughts, Frankie, even at such a difficult time. Thinking of you from here. All three of you together will help each other get used to this new development.

Mama B said...

Know that we are keeping all of you in our thoughts and give Thomas an extra squeeze from us. My goodness what a fabulous boy to have the strength to look through the scared to take back a piece of himself "but it doesn't have to have me"

Carole said...

Oh Frankie, hugs to you and Thomas and Bob. Thomas has a great attitude: "I have epilepsy, mom, but it doesn't have to have me."

Meg_L said...

OH Frankie,

Please give Thomas a hug for us. I feel I kind of know what you are going through.

I'm here if you want to talk about it.

Anonymous said...

I am so sorry ya'll have had such a rough year! Much love to you!
and Thomas, you are an amazing young man and I know that you will be just fine with whatever life hands you! Stay strong!

Becky said...


You must be so proud to have such a wonderful son, and you should be proud of having done such a fine job raising him.

I think you should all have a New Year's party in a few weeks, with hats, streamers, and a special meal : ).

barlowlf said...

Thank you so much for sharing about your son's diagnosis of Juvenile Myoclonic Epilepsy. I just happened on your blog looking for a free Asia lapbook and a 2006 blog of yours came up about Asia. I liked what you said and your seemed friendly, so I went to your current blog. I think it was a Godsend. What your son described is what my now 18yr son has just started telling me about in the last 2wks. I thought it was restless leg syndrome until the other day his whole body jerked in front of me. Then I read you blog tonight and bells and whistles were going off in my head. I'll be calling the doctor tomorrow. Thank you for being so open and honest about it. My son also has APD,he had many ear infections as a baby, and has always had a hard time focusing. To help with this he uses The Listening Program. I don't overload him with a list of instruction, just a few. It has gotten better over the years. Also he takes vitamins for attention,focusing. They help greatly, I can alway tell when he taken the vitamin or done the listening program. Just this past year he thanked me for The Listening Program, He was taking an intense HTML college class and he couldn't focus well in class when he didn't use the program. It finally dawned on him how it helped him. We decided to homeschool him so he wouldn't be labled in school. We also didn't want the pressures of the school wanting him on a drug to focus. He does fine at home and he doesn't have tons of distractions and the vitamins do not have any adverse side effects.He graduated this past June 2008 from high school.I appologize that this was long. Thank you, Thank you for posting this. I'll be lifting your family up in prayer. I think we could all use some extra prayer for ourselves,some days, months and years. I understand your loss, my mother passed away not to long ago, and right after that it did seem that life storms became ugly and unbearable. Guess what, slowly oh so slowly but surely the black cloud blew away, and my family life did get back to a semblance of normal. Enough said, thank you again.

audrey said...

Frankie, I so wish I could hold you both right now. I'm sitting here crying my heart out.

Hold on there hon. You're not alone.


Rose said...

You will be okay. Epilepsy is really not as stigmatized as it once was, and on meds, grand mal seizures will be rare. It is scary when first learning about it, but sooner than you can right now imagine, you will all know deep down inside where anxiety now dwells that it's really no big deal. I was diagnosed with a seizure disorder (unknown etiology) at age two. The only major adapting I've had to do is around driving. In most states, one has to be seizure free for a certain amount of time in order to drive. I think it was 4 years in Wyoming (is that Big Boy in Cheyenne's Holiday Park in your picture? my kids loved to play there when they were small). Here in NY it's 7 years. I'll be keeping you in my thoughts.

Frankie said...

First off -- yes, that is the Big Boy in Holiday Park. I was born & raised in Wyoming and Dad was an engineer for the UP for over 40 years. He worked on that Big Boy many, many times. It's very special to us, too! We don't live in Wyoming, though. We're in Minnesota, land of the "skeeters" now.

And yes, I know from first-hand knowledge it's really no big deal. But it is a big deal when your child gets a diagnosis that you hoped he wouldn't have. And it's a big deal adjusting. But, I do know that he'll have as normal a life as I do, with only few precautions.

It's just scary and a jolt to the system. And we've had a lot hit us this year, and this is just a blow we hadn't planned on.

Yet, it's good we know because he started his new medication today. He's adjusting. We're busy watching for a rash now.

I do know that this type of epilepsy has an excellent prognosis for control. In experience with family members, control has been decades long.

You just hope that your child has as "normal" a childhood/adulthood as possible. This is just a little wrench thrown in the way.

We've already met our first "prejudice" due to it. Thomas had a doctor appointment the day after his diagnosis so he could get a health check for his upcoming summer camp. Whoa, was that doctor an a$$. He didn't want Thomas going on the rock wall or on any high equipment. Period. He said it was too dangerous. I snapped right back at him and told him that I knew better, that they have safety equipment, and that his neurologist already okayed his doing the rock wall. I also retorted that he has not had a seizure, just the myoclonic jerks -- which I guess really are little seizures, even though they aren't like grand mals and he doesn't lose consciousness. So I had to wrangle with the doctor a bit until he finally signed the health form.

I'm a bit over-protective, but his doing stuff with proper safety equipment doesn't worry me. Well, summer camp stuff, that is. Supervision and safety equipment is a must, though.

Knock on wood.

Anonymous said...

Hugs to you all. Even though epilepsy is not the end of the world it sure is scary. My husband developed it when I was pregnant with our youngest. Scariest thing I'd dealt with. Luckily the meds are doing a good job of controlling the seizure. Good luck to you all.

Kate in NJ said...

Oh Frankie,
You all surely have had a rough year. Hopefully, knowing what Thomas is dealing with, will make things better. I hope he has a wonderful
time at camp and good for you fighting the a$$ of a doc on his behalf!

Heather said...

I agree with Becky, have a New Year's party and start over. You summed it up well when you said, "This year has just sucked." Halfway through is good enough. The new year can be 2008.5 and you can resolve to not be afraid, to not be sad, and to hug each other every day. Happy 2008.5!!

I am thinking of you and Thomas and Bob, and I'm confident you can find the strength to conquer the fear and heartache that has been dealt to you in the last several months.

Summer Fae said...


I am sending great big cyber hugs your way. Thomas is a remarkable young man. He has a great outlook on this. He is right, he has it not the other way around. My oldest had his tonsils out and did fine.

I will keep you all in my thoughts. I hope that Thomas has an amazing summer camp experience.


Elisheva Hannah Levin said...

Hi, Frankie,

I think Thomas' attitude shows you the way. This is often so with our kiddos who have disabilities.

As you know, N. aka Boychick, has Asperger Syndrome, and the comorbidities include anxiety and CAPD. He knows about all of his diagnosis, he understands why he takes medications, and he knows the likely implications for his future. And none of this deters him from who he is in the least. Thomas is right--he has a disability but the disability is not his identity!

I remember crying when we got N.'s diagnosis. Part of it was because it is so hard to know that your child has a disability, but part of it was relief. Once you know the problem, it is so much easier to deal with the symptoms, and understand where you are going with it all, even if you understand imperfectly at any given point.

I very much like the "Welcome to Holland" essay in books for parents with children who have disabilities.

Anyway, I do think you ought to have a New Year's Day party this weekend, too. You've had a year's worth of troubles in seven months. Start fresh, knowing what you know.

Sending our best from Ragamuffin Studies